Should we be so worried about dementia?
Studies in the UK have shown that dementia is now our biggest health fear, ranking even above cancer. But why is dementia so scary? And is our dread really justified?
A 2017 survey in the UK showed that almost four in ten (38%) consider dementia their biggest health fear, compared to 26% for whom it’s cancer, and 6% who said heart disease — which is actually the UK’s biggest killer. So why does dementia have such a hold over our concerns?
If we were to weigh up a risk purely objectively, there would be just two aspects in play: the likelihood of it occurring, and the consequences if it happened. But, in reality, risk perception is not that simple.
Let’s have a look at the different aspects that make up our fear. First those simple, objective components.
1) The consequences: what do we fear when we fear dementia?
In the poll, 62% believed that the consequences of dementia are that ‘life is over’.
For example, Cecilia, 33, whose mother, Helena, 67, was diagnosed with dementia two years ago, is one of millions of people who worry about having dementia in the future.
I asked Cecilia what exactly she fears about potentially being diagnosed with dementia. She first answered with no hesitation:
“I fear losing the quality of life”
Then she paused and said that actually, she had never questioned that before. Cecilia continued:
“I fear causing issues to someone else. Also, I feel that dementia is a particularly cruel disease: you don’t recognize yourself and others; you lose your essence as a person… that is what I fear”
Psychologists have long recognised that the decline in memory abilities linked with dementia deeply and existentially threatens two defining characteristics of our human identity: the physical self and the ‘symbolic self’.
Some cases of dementia can also result in loss of independence, identity and control, and it can seriously threaten perceptions of a shared reality with others, something crucial for everyday social communication. Also, sometimes family or carers assume that people with dementia have less awareness than they actually have, affecting their communication and credibility. Therefore, dementia seems to threaten the idea of our identity as human beings, an aspect that doesn’t happen in most diseases and could prove particularly scary.
Alongside these perhaps rational fears, there are a huge range of myths about life after a diagnosis of dementia. The 2017 poll also included asking people about their fears, published in the Alzheimer’s Society, which included:
- 24% thought that people would instantly have to stop going out for a walk on their own.
- 45% thought they would have to immediately stop driving a car.
- 49% worried people would think they were ‘mad’.
- 58% thought they would personally struggle to join in conversations post-diagnosis.
- 58% thought a dementia diagnosis means no longer enjoying the things they used to.
- 68% think they would no longer be the same person if they were to be diagnosed with dementia.
Many of those are unfounded fears.
Interestingly, the perceptions of dementia vary depending on the country and this might impact how much people fear it. Whilst in the US, for example, a majority of laypeople correctly see dementia as not just a normal part of ageing, in studies in China and India, people view dementia as something everyone can expect to some extent as they age. Whilst not factually correct, it likely reduces their fear of it. A study from China reported that 27% of people over 65 fear dementia, and only 15% of people between 40–64 fear it, both are smaller numbers in comparison to the 38% found in the UK. However, as in the UK they also reported fearing dementia more than cancer (22%) and heart disease (2.5%).
So, for many, especially in the West, we are over-estimating the consequences of getting dementia. Devastating as it is, it does not mean that ‘life is instantly over’.
2) The likelihood of getting dementia: is it as common as we think it is?
According to the World Health Organisation (WHO) 50 million people around the world have dementia, and there are nearly 10 million new cases every year. Like Cecilia, these millions of cases potentially mean even more millions of family members facing caring for a relative with dementia in the future. These sorts of big numbers are often quoted in the media. They might sound huge and scary, but without context they don’t tell us much about the magnitude of the risk of developing it.
So what is the actual likelihood of us getting dementia?
Well, according to Alzheimer’s Research UK, on average 7 out of 100 people over 65 are expected to have dementia.
And what about those with the highest risks? In the media and even in research papers, it is common to find alarming headlines claiming certain groups of people are at elevated risk, and they normally do so by using relative numbers. For example, ‘smokers are 60% more likely to have dementia’; but this number cannot be assessed without knowing the answer to the simple question: 60% of what?
Well, for example the 60% risk increase due to smoking means 60% more than the risk that is normaly expected in the population over 65 (7 out of 100).
60% of 7 is 4.2, therefore in smokers we would expect around 11 (7 + 4) dementia cases out of 100 (an extra 4).
All of these numbers can be understood much more clearly when put in a graphical form:
Using similar — ‘absolute’ — numbers to put into perspective some of the other major risk factors associated with dementia, in people over 65 with diabetes or low physical activity we would expect around 10 dementia cases out of 100, in comparison to 7 out 100 expected in people without these risk factors.
Again, then, many are probably over-estimating the numerical chances of getting dementia. And when shown in this graphical form, the numbers may look somewhat different.
Risk Perception
There is the ‘objective’, accountancy way to look at risks and then there is the ‘real’ way that we perceive risks. Our minds work in ways that do not follow purely mathematical logic. For example, someone can be relaxed travelling by car and extremely anxious in an aeroplane, when the probability of having an accident or death per mile is much higher in the first one.
The psychologist Paul Slovic, a specialist in risk perception, has described how aspects of the risk that aren’t simply its numerical likelihood or potential consequence tend to affect our perception. For example, having a lack of control, a sense of unfairness or inequity, ‘dread’, or the idea of catastrophic potential or fatal consequences can all make a risk seem more scary.
This could partially explain why many people feel more fearful about travelling by aeroplane than by car. Could it also explain why we tend to fear dementia much more than perhaps we should? Dementia to us feels catastrophic, something we don’t have control over and which could strike anyone out of the blue and almost at random — all things that make a risk particularly ‘dread’. But are these also misperceptions?
Do we really lack control over developing dementia?
Like most diseases, the risk of having dementia is influenced by factors that we cannot control such as genetics, but research shows our chances of developing it are also greatly influenced by factors that we can potentially control, like physical activity.
A recent study published in The Lancet analysed hundreds of studies conducted around the world and put together the evidence on the risk factors for dementia. It reported that the risk factors that we cannot modify contribute to 65% cases of dementia, but 35% cases of dementia are due to factors that we could control, meaning that we could potentially prevent about a third of dementia cases.
Genetics is one of the factors we can do nothing about, but the main author of the study, Prof. Gill Livingstone, emphasised: “There is one relatively common gene called APOE4 and it probably accounts for the 7% of the overall risk of dementia”. On the other hand, Gill wants to focus on the big room for prevention:
“We’ve got a really important message: you might be able to do something; you can do something to decrease your chance of getting dementia.”
Gill and her team identified factors that we could potentially modify to prevent dementia such as high blood pressure, obesity, untreated hearing loss, smoking, low physical activity, social isolation and diabetes.
“Currently, and really to my surprise, the biggest modifiable risk in the population is accounted for a lack of hearing; people who have problems with hearing in middle age and they don’t use hearing aids”
Correlation is not causation
However, there is some caution to be applied to these findings: these are correlations but do not necessarily mean that one thing causes another. For example, the more birthdays someone has the more likely they are to die, but of course it is not birthdays and birthday parties in themselves that are causing the raised risk of death. One correlation with dementia risk is low education levels — but these themselves are inextricably linked with all sorts of other socioeconomic factors that are difficult to control for statistically.
This difference between correlation and causation is particularly interesting in depression and dementia: while it is clear that people with depression have higher rates of dementia, it is not fully clear whether depression leads to dementia or the other way around, or it actually could be both ways.
“We think that some of the increased risk of depression may be that as people are developing dementia, their brain becomes more vulnerable and they are more likely to become depressed at that time, and then, if they are more depressed, that itself increases the vulnerability to dementia… we think there is a circular argument”
said Gill.
Has the media anything to do with our dread of dementia?
So it seems that we in the UK have an inordinate dread of dementia, which is likely to have several components: we think it is more common than it is, more catastrophic in its consequences, and that we have less control over our chances of developing it than we really do. But these perceptions are different in other countries. Is our media coverage playing into this cultural dread?
A study from the University of Worcester analysed 350 UK newspaper articles and reported that a ‘panic-blame’ framework was evident in much of the media coverage as well as a catastrophic portrayal using terms such as ‘tsunami’ of cases or describing the consequences of dementia as ‘worse than death’ with sufferers ending up with no identity.
I wonder if the media has contributed to a vicious circle: stoking fear (even unintentionally) brings more readers, so the media feels motivated to continue with a negative framing.
Fear shouldn’t be the path for good communication, since we may be missing out a crucial fact: we can potentially prevent a third of dementia cases by making changes in our lifestyle and health care. Relatively simple things like keeping a healthy weight, not smoking and checking our hearing could make a big difference (not forgetting that a big potential for prevention relies on public policies). If we focus on prevention at individual and social scales, there is more chance that dementia could inspire less fear and stigma and more motivation to take actions to have the best life possible — with or without dementia.
It seems, therefore, that there’s a clear need to improve communication about the risks of dementia, to help break this vicious cycle. If the media could commit to give absolute risks, use graphics to illustrate them, and not imply that the consequences of dementia are so catastrophic, it could help us all get our perceptions more into proportion and feel more empowered to take action.
